The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 15 October 2017 15 October 2017
The Massachusetts CFIDS/ME & FM Association is pleased to welcome Linda Tannenbaum, President/CEO of Open Medicine Foundation, as the keynote speaker at our Fall 2017 Meeting & Lecture. The lecture is open to the public and will be held on Saturday, November 4, 2017 at the Newton-Wellesley Hospital, in the Shipley Auditorium of the Bowles Conference Center, 2014 Washington St., Newton, MA 02462. The lecture title is: "ME/CFS: Research Update."
Linda will present an update on Open Medicine Foundation’s revolutionary research and what OMF and others are doing to increase awareness, education and support. There will be time for questions after her presentation. Read more about the event below.
This is an End ME/CFS Worldwide Tour event.
Read more below for registration and parking information. Register Now
- Last Updated: 18 October 2017 18 October 2017
The Massachusetts CFIDS/ME & FM Association is pleased to host a special showing of the Sundance award-winning documentary, UNREST, by Jennifer Brea on Sunday, November 12, 2017 from 2 to 4:30 pm at the Regent Theatre, 7 Medford St., Arlington, MA 02474. The film will be followed by a panel discussion. Doors open at 1:15. The theater is wheelchair accessible. Parking is free and available on street or in the neighboring city lot.
Synopsis: When Harvard Ph.D. student Jennifer Brea is struck down by a fever that leaves her bedridden, she sets out on a virtual journey to document her story as she fights a disease that medicine forgot (1 hour and 37 minutes). Watch the film trailer. Limited free tickets for health care professionals and our co-sponsors. Read more below for tickets and other information.
- Last Updated: 05 September 2017 05 September 2017
“Unrest” shows in the Boston area on October 12 at the Globe Docs film festival. Tickets are going fast. Get yours at 2017 GlobeDocs Film Festival. We are exploring possibilities for other screenings in Massachusetts. If you would like to help arrange a screening in your area, please Contact Us. The U.S. broadcast of Unrest will be on PBS's Point of View in early January. Check local listings for day/time.
- Last Updated: 03 September 2017 03 September 2017
A support group member in another state, herself a long-time ME/CFS advocate, recently remarked that no one in her support group seemed interested to hear about advocacy activities. Their concerns were with sharing their symptoms and getting ideas from others on how to treat them, where to find knowledgeable doctors, and finding support in the group – all legitimate and powerful concerns, totally appropriate for members of a support group. Still, she wondered, why aren’t more ME/CFS patients interested in what other patients and family members (advocates) are doing to bring more public and government awareness and funding to their disease?
- Last Updated: 11 August 2017 11 August 2017
Save the Date! – Nov 4, 2017
The Association’s annual public lecture will be held on Saturday, Nov. 4, 2017, at Newton Wellesley Hospital. Our speaker this year is Linda Tannenbaum from the Open Medicine Foundation, where some very exciting research is underway.
Mark your calendar now. More details will follow!
Research Symposium at Stanford THIS SATURDAY will be live-streamed!
COMMUNITY SYMPOSIUM at Stanford University (on behalf of Open Medicine Foundation)
We are pleased to announce that the Community Symposium on the Molecular Basis of ME/CFS at Stanford University on Saturday, August 12th will be live-streamed. The event will begin at 9:00 AM Pacific Time and will conclude at 5:00 PM Pacific Time. Patients, parents, researchers, clinicians, family and friends are invited to register to watch all or part of the program from anywhere in the world via live-stream.
Pre-registration is required. There is still time to register to watch the program live. Please tell a friend - forward this announcement to share this unique experience with our worldwide community.
Ronald W. Davis (Stanford)
Robert Naviaux (UCSD)
Chris Armstrong (U Melbourne)
Jonas Bergquist (Uppsala U)
Maureen Hanson (Cornell)
Neil McGregor (U Melbourne)
Baldomero Olivera (U Utah)
Mark Davis (Stanford)
Alan Light (U Utah)
Alain Moreau (U Montreal)
Wenzhong Xiao (MGH)
The Symposium will be made available on OMF's YouTube Channel for free or you can order a DVD for $15 (which includes shipping). All orders are due by September 10. Order your DVD today.
For more information, see www.omf.ngo/community-symposium
Tell Congress "Don't defund ME/CFS!"
Urge your Congress people to restore funding for CDC (thanks to Solve ME/CFS Initiative)
Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC....again!
Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we've made so far!
Here's a simple form you can fill out to send a personalized letter directly to your U.S. Senators and Congressperson who will be voting on the 2018 Federal Budget. We want as many letters as possible from as many states as possible! Here’s another chance to make ME/CFS visible to your representatives in D.C. Be sure to personalize your letter by writing a sentence or two about yourself in the “Add a Personal Message” box. Your personal message will appear at the beginning of the letter. To access the form: https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00009
Action is needed NOW, since the Senate will begin work on the budget as soon as they return in September.
NASA 10-minute Lean Test for Orthostatic Intolerance
Have you been tested for Orthostatic Intolerance?
OI is one of the 5 key symptoms of ME/CFS identified in the Institute of Medicine report. Although it appears to be more common in children and adolescent patients, many adult patients also have this condition but it may not have been recognized. It is treatable! There is a simple test which requires no special equipment that your doctor can do can show if you have OI.
Here’s one patient’s experience with the test. The page has links to more description about the test and complete instructions that you can take to your doctor.
We need your help to identify doctors who can treat ME/CFS and FM patients!
Here’s a note from our Patient Services team. Help finding doctors is our most requested service. We have very few doctors to recommend – we need more names! Please help us by letting us know of any doctor you see who has helped you. They don’t have to be ME/CFS or FM experts, just open-minded, respectful, and willing to learn and work with you to help you feel better. Our focus is on doctors in Massachusetts or surrounding states.
Dear fellow patients, family members and friends,
One of the most important of patient needs is to find physicians and health care providers that are knowledgeable about ME/CFS, fibromyalgia, Lyme Disease, and other associated illnesses.
One of our major services is health care provider referrals. And our primary source for these referrals is the patient community.
We especially need patients and their families to tell us about physicians/health care professionals they've seen who are able to provide diagnosis and treatments.
We are asking for your help. Please click this link: https://www.masscfids.org/provider-recommendation-form to fill-out a questionnaire on health care professionals with whom you've had significant contact. We understand you are sick and may not have a lot of energy at any one time, so go at your own pace. If you can provide feedback on more than one doctor or other provider, please use multiple forms.
We want to assure you that any and all information you provide will be kept strictly confidential and your name will never be associated with the information. Also, we are careful not to overload any one doctor with patient referrals.
We would like to get both positive and negative feedback so that we can help patients obtain the best referrals possible.
By taking a little time, you will be helping patients who need to obtain diagnosis and treatment.
THANK YOU SO MUCH.
Patient Services team, Massachusetts CFIDS/ME & FM Association
This is Part One of our summer newsletter. Part Two will follow shortly and will focus on recent research and advocacy.
More Articles ...
Notice about names
The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.